Today is Thursday July 18, 2019. I would have been off of Plaquenil 15 weeks today. Yes, my friends, you noticed the would have been? It’s been that kind of
week. It’s been that kind of month. I was off of the medicine just long enough to make myself sick.
So, 3 doctors appointments, one hospital trip and a vein scan later, I have positive lab and I’m symptomatic, so back on the meds I go- taking with me the all familiar Systemic Lupus Erythematosus diagnosis.
I was disappointed. And mad. And scared. Anxious. And really, I couldn’t believe my ears. I was doing so good. It’s been sorta sucky to watch it fall to pieces around me. Doc had two theories.
- The first was that the Plaquenil was causing the dizziness/ balance stuff.
- My disease has progressed past the realm of just Plaquenil.
We took the Plaquenil away long enough for me to become symptomatic again and the balance/dizziness persisted, soooooo numero uno can be ruled out. I have mixed feelings about the second theory. Mainly because while my lab indeed shows disease activity, it’s the lowest it’s ever been and that lab was taken while I was off the medicine. Also, because no one wants to believe that they’re getting sicker instead of better.
Am I right?
Then again, I’m not a Lupus specialist. Nor a doctor.
I’m just a very confused patient.
Anyway, I go to Sanger Heart in August and I have upcoming Neuro appt in September. Maybe they can come up with something before we have to move on to chemo/ cancer type drugs.
I HATE taking medicine.
But, I LOVE living.
So, there’s that.
I’ve missed my little blog. Miss you guys. I hope things will be back to normal soon. I have so much I want to do. So much I want to write and so much on YouTube I want to create. It’s just the worst time ever to be sick. Not that anytime is a good time, but you know what I mean? I want to be creative, I want to create. I feel like I need that as an outlet right now, but my damn body won’t cooperate.
It’ll get better. I hope.
Forever the optimist.